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Patient Voices: A.L.S.

JUNE 20, 2017

Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, affects parts of the nervous system that control voluntary muscle movement. The average life span of someone with A.L.S. is five years after diagnosis. Here, five men and women speak about how their lives have changed as a result of this devastating illness.

In 2002, Eric Lowen began to fall frequently. Then he noticed he was losing strength in his upper body. At first he had trouble carrying his music equipment, but eventually carrying a pizza box became difficult. Mr. Lowen, a member of the songwriting team Lowen and Navarro, found out that he had A.L.S. in 2004.

Mr. Lowen considers himself fortunate that A.L.S. has not taken away his ability to speak, as happens in many patients. He was able to continue playing his guitar until early 2007, and he could sing until later that year. His last public performance was in June 2009.

Mr. Lowen said that one of the worst parts of A.L.S. has been “losing all of the abilities I’ve spent a lifetime developing.” He has been in a wheelchair since 2005 and today relies on a ventilator to help him breathe. Still, Mr. Lowen considers himself very lucky to be surrounded by his wife and five children. “There are positive things to get out of every situation, but they have to be looked for,” he said.

Eric Lowen lost his battle with A.L.S. in March, 2012.

Two Boys and a Diagnosis of A.L.S.

Wes Rose,
37,
Glenside, Pa.

Sabina Louise Pierce for the New York Times

Sabina Louise Pierce for the New York Times

Sabina Louise Pierce for the New York Times

Sabina Louise Pierce for the New York Times

Sabina Louise Pierce for the New York Times

Wes Rose, an assistant professor of biology at Arcadia University, noticed that he was walking with a slight limp as early at 2004. After a year and a half of doctors’ visits, he finally saw an A.L.S. specialist who confirmed that he had the disease.

Mr. Rose said one of the major difficulties for patients with A.L.S. is affording all of the special equipment necessary to remain mobile. Beyond canes and crutches, wheelchairs can cost up to $30,000. “The expenses are astounding,” he said.

Most patients with A.L.S. die within five years of diagnosis, but 20 percent will live longer. Mr. Rose feels fortunate to have a slowly progressing form of A.L.S., which has not yet greatly affected his daily routine. Typically, the pace at which A.L.S. is progressing remains constant.

Mr. Rose’s two sons, Aiden and Nathan, were infants when he received a diagnosis, so they have grown up understanding their father is different from other dads. Patients with A.L.S. must make difficult decisions regarding the types of invasive treatments they are willing to undergo to prolong their lives. Mr. Rose is still relatively well but already has been considering these options; he feels conflicted about how these decisions may affect his family.

A ’Concentrated’ Retirement

Beth Chilcoat,
61,
Worthington, Ohio

David Maxwell for The New York Times

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David Maxwell for The New York Times

David Maxwell for The New York Times

David Maxwell for The New York Times

Beth Chilcoat became a widow three years ago after her husband, David, died from complications of A.L.S.

Mr. Chilcoat’s symptoms began in 2006 at age 55 with painful cramping in his abdomen. After seeing an orthopedist and undergoing several tests with a neurologist, it was determined that he had A.L.S.

The Chilcoats were shocked by the grim prognosis, but they quickly gathered their children and grandchildren to tell them the news. Together, the family decided to make the most of the time that Mr. Chilcoat had left.

The Chilcoats decided it would be best for everyone if they were open and honest about their feelings. Ms. Chilcoat believes this attitude helped her get through the worst times. “I told my family that if they didn’t want to know, they shouldn’t ask,” she said.

Mr. Chilcoat kept a journal and blog through his illness, which Ms. Chilcoat has had published. The book, “Nobody Tells a Dying Guy to Shut Up,” chronicles his experience with A.L.S.

Taking Charge of Fate

Doc Robinson,
53,
Boston

Fabrizio Costantini for the New York Times

Fabrizio Costantini for the New York Times

Fabrizio Costantini for the New York Times

Fabrizio Costantini for the New York Times

Fabrizio Costantini for the New York Times

David Robinson, a former paratrooper whom friends call Doc, injured his back in 2002. A few months later, he began to drop things without explanation. For a few years, he tried to work through his muscle weakness, thinking it was a result of his injury. But when surgery revealed no lasting damage from his injury, Mr. Robinson began to inquire further.

Mr. Robinson has lost fine motor control in his hands and strength in his arms and wrists. His legs are strong enough to stand, but he relies on a wheelchair to get around because his wrists are not strong enough for crutches.

As a man over six feet tall, Mr. Robinson said he has been trying to get used to the view from a wheelchair.

Describing himself as stubborn, he has a hard time asking for help with things like reaching tall shelves and buttoning his shirt. Still, Mr. Robinson remains active, working for the ALS Association, sailing and helping out fellow veterans. He feels that by living a full life now, he prepares for his eventual passing.

A Mother Turned Caregiver

Dora Couret,
55,
Breaux Bridge, La.

Lee Celano for The New York Times

Lee Celano for The New York Times

Lee Celano for The New York Times

Lee Celano for The New York Times

Dora Couret, a nurse, has been helping to care for her daughter, Niki McWilliams, since she received a diagnosis of A.L.S.

Ms. McWilliams began to have upper body weakness when she was pregnant with her daughter, Mackenzie. Doctors assumed the weakness was caused by her pregnancy, but when the symptoms persisted, Ms. McWilliams went to see a neurologist.

Nine years later, Ms. McWilliams is no longer able to stand by herself or to walk very far. Her speech has been affected by the disease, causing her to mumble and slur words. She said people often mistake her for being drunk.

Ms. Couret spends three days a week helping her daughter, and a nurse is present the rest of the week. Ms. Couret says that being a caregiver to her daughter has been very hard and that she cannot imagine what it must be like to depend so much on others.

Patient Voices is an audio-visual series that tells the stories of people living with chronic illness. Patient Voices: A.L.S. was originally published in Oct., 2008.